I was diagnosed with myeleofibrosis, a fatal bone marrow disease where the bone marrow becomes extensively scarred, in December 2007. I learned of my illness when I had an unexpected gallbladder surgery and had uncontrolled bleeding, which resulted in a bone marrow biopsy to determine why I had bled. Though the condition could be controlled by medication, the doctors informed me that I would need a bone marrow or blood stem cell transplant within two years to survive.

FAQ

Q: What happens if I am identified as a match?

A: If you have been contacted by Gift of Life because you are a potential match for a patient who needs your help, the next step in the process is known as “Confirmatory Typing.” At this stage, you will be asked to give a sample of blood from your arm which will be analyzed to confirm that your tissue type matches the patient. Gift of Life will work with you to arrange the appointment for your blood draw. We will make every effort to ensure that it is as convenient as possible for you, while meeting the urgency and time constraints imposed by the patient's medical condition.

Q: If I am a match and have second thoughts, can I change my mind?

A: You have the right to change your mind about being a donor at any time. Donating is always voluntary. If you decide you do not want to donate, let us know right away. We will need to continue the search for another donor without dangerous—even life-threatening—delays for the patient.

A: Donating bone marrow is a surgical procedure done under general or regional anesthesia in a hospital. Doctors use needles to withdraw liquid marrow from the back of the pelvic bone. PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Through a process called aphaeresis, a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.

Q: How long does the donation process take?

A: Becoming a donor requires a time commitment. Before you donate, there are several steps to make sure you are the best donor for the patient. These steps include an information session to provide resources to help you make your decision, as well as appointments for additional blood tests and a physical exam. The time needed for the actual donation depends on the donation procedure. On average, the entire process can take 30 to 40 hours, including travel time, over 4 to 6 weeks. Marrow and PBSC donation require about the same total time commitment.

Q: What are the odds I will be a match for a patient?

A: You may be called any time between initial registration and your 61st birthday. The odds are variable and depend on the rarity of your tissue type. On average, one in 1,000 of Gift of Life donors are asked to donate every year.

Q: Who pays for the procedure?

A: All expenses are paid by the patient’s insurance or Gift of Life. You will not incur any expenses in this process such as costs associated with travel or the procedure itself.

Q: Will I have to travel to make the donation?

A: We try to make it as convenient as possible; however, there are times when travel to a collection center is necessary for the physical exam and donation.

Q: Can I be tested to join the registry if I am pregnant?

A: You can join the registry; however, if you are a match for a patient, you will not be able to donate until several months after giving birth and only once you have stopped breast feeding.

Q: Do I have a choice whether I will donate bone marrow or blood stem cells?

A: The patient’s physician determines which stem cell source offers the patient the best treatment option. Of course, ultimately the decision to participate is up to the donor.

Q: Will I be compensated for donating?

A: No. By law, compensation is not permitted.

Q: What are the chances a patient will find a match within their family?

A: Only 30 percent of patients will find a suitable match within their family. As a result, approximately 70 percent must seek the assistance of unrelated volunteer donors.

Q: Can I be tested for a specific patient?

A: When you join the registry, you make a commitment to consider donating to any patient in need who matches you. To be tested only for a specific patient, you will need to have your testing done privately.

Q: What will I learn about the patient? Will I ever meet them?

A: The only information we are authorized to release is the patient’s diagnosis, age, and sex. If both donor and recipient consent, then personal information can be exchanged after one year in most, but not all, cases.